Web-Based Genetic Testing and the 1000$ Genome

In a recent debate in one of the major Swedish newspapers, three medical researchers proposed an increased use of DNA-testing in the health-care, for example in relation to susceptibility testing towards our most common diseases. In their article they also came out in support of a public-private partnership in order to achieve such an increased use of DNA-testing in the health-care system (http://www.svd.se/opinion/brannpunkt/avdramatisera-dna-testerna_5521935.svd). In my answer to this article I raised some questions regarding a number of issues that I thought were not addressed by the three researchers, and among those were the question of a potential shift in what we consider to be normal and abnormal in relation to an increased understanding of our genetics and our biology in general (http://www.svd.se/opinion/brannpunkt/dna-tester-vacker-svara-fragor-som-kraver-svar_5536473.svd). Up to this day the debate on direct-to-consumer genetic testing has been whether the test offered by such companies as 23andMe etc., actually do give any answers on individual susceptibility for future disease. Another reply in the above debate did state exactly this argument: The tests that are offered today do not give us the full picture for an individual susceptibility assessment to be used as a routine within the health-care system (http://www.svd.se/opinion/brannpunkt/dna-tester-kan-vara-helt-missvisande_5539425.svd).

What we have to consider when we think about the combination of genes and the internet is the “1000$ Genome”; that is, the day when we can do whole genome sequencing for under 1000$. Today that cost is still in the range of 30000-40000$ (these figures is for Knome) depending on whether you are a private individual or a researcher buying the service. So there are still some distance to cover, but I think nobody doubts that we will get down to the figure of 1000$ quite soon. And what will happen then? A full sequencing means that we will be able to look at the whole (or almost the whole) DNA of an individual, instead of the “snap-shots” that we are getting through the SNP-analyses provided by 23andMe etc. I think that we will be able to connect at least a number of dots through the information and knowledge that may come out as a result of a wider employment of full sequencing. It may even give us a better picture on the interaction between environmental and genetic factors in relation to disease, but also in conjunction to other traits which currently are not considered within the concept of disease. And it is within this theme that things start to get complicated as the question of the normal and abnormal might become: (1) defined in accordance with genetic factors and variations, (2) defined according to the laws of the market, as well as (3) be subject of a relocation from the public to the private sphere. One of the questions that we have to address is whether this scientific and technological change will be accompanied by a cultural and social change as well, a change in our cultural understanding of disease whereby the concepts of normal and abnormal will be redefined according to genetic variations that are present in both normal and abnormal conditions and traits. We also need to address what impact a digital culture and digital biosociality might have upon these questions, especially in the light of future possibilities to actually obtain usable information from the web-based services.